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Posts from the ‘Joy Jacobson’ Category

The Power of Words, and of Silence

Black-capped chickadee.  Matt MacGillivray, flickr

Black-capped chickadee.
Matt MacGillivray, flickr

Joy Jacobson is a CHMP senior fellow. Follow her on Twitter: @joyjaco

For the past couple of years I’ve attended The Power of Words, the annual conference of the Transformative Language Arts Network. I’ve become more of a conference-goer in recent years, as well as a presenter, but this one seemed unlike any of the others I’ve attended. Novelists and poets, musicians and composers, expressive-arts therapists and health care workers, those new to writing and those who’ve devoted their lifetimes to the craft all gathered for a few days of “workshops, performances, talking circles, celebration and more.” 

I left last year’s gathering, held at the beautiful grounds at Pendle Hill, a Quaker retreat outside Philadelphia, with the phrase radical acceptance going through my mind. I won’t be able to attend this year’s conference, to be held at Lake Doniphan Retreat Center in Kansas City, MO. I’ll miss those people and the community that gets made when like minds and intentions come together.

It’s an aptly named conference. Last year I led a poetry workshop on “self-elegy,” and it was indeed powerful to see what a group of readers and writers could compose in 90 minutes. (Two brilliant attendees, Seema Reza and Maiga Milbourne, each blogged about it, here and here.) But that phrase, power of words, has got me thinking, too, about the powers of silence.

For the first time in the many years that I’ve owned a cell phone (or has it owned me?) I have turned off the text-message-notification noise. For 10 days now there has been no beep, no trill, no hum or vibration, no ring-a-ding-ding when a message arrives. It started one insomniac night as an attempt to block out any potential disruption to sleep, should I have been lucky enough to fall back into it. In the morning I thought it might be nice to take a vacation from the fake bell—not from text messaging itself, just from the relentlessly Pavlovian audio.

As I write I’m sitting outside. There’s a distant thrum whose source I can’t quite identify, probably a train. A couple of chickadees perform their unrepeatable tweets. The 10 AM church bell chimes, and my little dog decides to yap in response to something beyond my hearing. Clank: a truck hits a bump. A neighbor’s air conditioner rolls over and over. The cicadas start, then drop, then start again their annual threnody to summer.

In attending to these entirely ordinary sounds I realize something about awareness. Perhaps what I found so remarkable about the Power of Words conference didn’t have entirely to do with the words themselves, whether written, read aloud, spoken, sung, or chanted (and they were remarkable). It had to do, as well, with the attention we all paid to one another: undistracted, unrushed, clear-eyed and -eared—radical—attention.

I just checked my phone. In the time it took me to write the previous paragraph a friend texted. Perhaps we could have a bike ride or a walk later today? I’ll get back to him in a minute or two.

Narratives of Diversity: Encouraging Cultural Responsiveness

By Jim Stubenrauch

What’s especially exciting about writing with a group of people in a workshop setting is the opportunity it affords to witness others giving their stories form and bringing them into the open, in real time. Sometimes, it’s astonishing what people can produce in just a few minutes.

I recently teamed up with two colleagues, nurse practitioner and nursing educator Dr. Kenya Beard and poet and writing teacher Joy Jacobson, to present Narratives of Diversity: Encouraging Cultural Responsiveness, a daylong workshop held at the CUNY Graduate Center. The goal of the day was to achieve a better understanding of how students, patients, and professional colleagues experience themselves and others in increasingly diverse health care and educational environments. Participants explored their own experiences of diversity and marginalization through guided creative writing exercises and discussion and, together, we sought strategies that all of us could use to become more culturally responsive, both personally and in our professional roles. (To learn more about Kenya’s work in promoting multicultural education and reducing health disparities, see Joy’s interview with her, here.)

Shannon Richards-Slaughter, left, with her mother, Rose Richards, ca. 1987

Shannon Richards-Slaughter, left, with her mother, Rose Richards, in 1987

One of the workshop participants, Shannon Richards-Slaughter, an educator and writer from Charleston, South Carolina, wrote a first draft of the following piece during a 20-minute guided writing session and then shared it with the group. The prompt was: “Write about a time when you felt marginalized or witnessed someone else being marginalized.” Shannon’s story isn’t primarily about something that occurred in an institutional or professional setting; rather, she used the idea of marginalization to examine her increasingly tenuous connection to her mother, who is slowly withdrawing from her relationships with friends and family. Anyone who has provided long-term care for an aging loved one will recognize the complex, sometimes conflicting emotions Shannon expresses in this poignant and heartfelt piece. Our great thanks goes to Shannon for sharing this with HealthCetera‘s readers.

Heart on Automatic

We have marginalized my mother. Or has she marginalized us? She’s 96 and stays all day in her bedroom, our former guest bedroom. That’s how she acts. Like a guest. Like someone just passing through. Physically, she’s fine, her doctors say: blood pressure, pulse, and—now, with the pacemaker—heart. All fine. She takes less medicine than my husband and I do. But she is far away, and in some ways, we have let her go. At first, I took her to all the specialists—the gerontologist, the neurologist, the psychologist, the psychiatrist. There were work-ups and tests and consultations:

She might be depressed.

No, it’s not Alzheimer’s.

It could be an eating disorder associated with the elderly.

No, it’s atrophy of the capillaries of the brain.

It’s not dementia. We can’t say it’s dementia.

Maybe, it’s a form of dementia…

She’s traveled so far away from her family, her friends, to live with us. She’s obsessed with finding out where she is, sometimes asking me, “What happened to the house?” Meaning the house she’s lived in for over fifty years, 1004 North Michigan Avenue in Atlantic City.

“What happened to the house?”

As if the house has disappeared because she can’t see it. As if it doesn’t exist because she’s not in it. It’s still there, we tell her. You’re just staying with us now. We beg her to come, sit with us around the kitchen table, have dinner with us. Please. Don’t sit over there on the sofa by yourself. Join us, be with us.

“I’m ruining your life,” she says. “I’m making trouble.”

And she is and she does when she refuses to take her medicine, to get dressed, to eat anywhere but in her bedroom, to talk to her sisters long-distance on the phone. She is so unhappy and so angry. We take her back then, to 1004 North Michigan Avenue, because maybe, just maybe, if she is in her own home, back among her own surroundings, siblings, friends, maybe then she’ll do better. But she is unhappy and angry and won’t eat and doesn’t like the lady who comes in to help her.

We bring her back. This time to Ashley River Plantation, an assisted living facility which is supposed to give her independence and dignity and where she stays in her room all day and asks, “What is this place again? Am I on assistance?”

Finally, it’s back at our house when she asks, “Where am I now?”

“Charleston,” I say.

“But where in Charleston?”

“My house.”

She turns away. Swimming out to some other shore. And we have let her go. I have let her go.

I take her meals up to the room and tell her what’s on the plate. I turn on the lights so she won’t be always in the dark. Every now and then I take her to the beauty parlor and the podiatrist.

She will not go to church.

I take her to the doctor where they tell us the same things:

Get her to eat.

Make sure she takes her meds.

Keep her active.

But we’ve heard it all before, and my heart is on automatic, a remorseless machine pumping energy into my care of her. I feel the line attaching us grow increasingly slack. She is beyond my reach.

Rose Richards in 2003

Rose Richards in 2003

Shannon Richards-Slaughter is a faculty member in the Writing Center/Center for Academic Excellence at the Medical University of South Carolina. She regularly meets with health professions students from all six of the university’s colleges to review a variety of writing assignments, including literature reviews, research papers, papers for publication, capstone projects, dissertations, scientific papers, and grant proposals. Nursing students make up the majority of her Writing Center appointments. In another life, she has been a playwright and a fiction writer, most notably winning the New Professional Theatre 2005 Writer’s Festival Award and the Ms. Magazine College Fiction contest.

Jim Stubenrauch is a senior fellow at the Center for Health, Media & Policy and teaches writing at the Hunter-Bellevue School of Nursing.

Medicine IS Humanism

Diane Kaufman

Diane Kaufman, MD; photo by Scott Friedman

This guest post is by Dr. Diane Kaufman, a child psychiatrist, poet, and passionate advocate for arts in healing. Her poem “In Memory of the Future,” in honor of the Newtown, Connecticut, shooting victims, is powerfully performed by Newark Arts High School students. Click here to watch the video of their performance.

The practice of medicine revolves around people. A person in need is at the center of the health-caring circle, and all around are other people who are trying to be of help. Blood tests, respiratory devices, infusions, MRIs, and other forms of advanced technology at their very best diagnose and treat, and that is so very important and essential, but they alone can not care. They are not alive, and they know nothing about love, joy, kindness, sorrow, loss, dying, death, and the cry of a newborn child. Only human beings can care—that is, if they choose to do so. If they are encouraged to do so. If they have experienced other human beings caring for them and about them.

And it all starts with each of us. Do we have the courage to express the humanity of our own beating and sometimes breaking heart? Do we have the passion and determination to change a culture of business as usual? To acknowledge that the “hidden curriculum,” can become more powerful than all the humane lessons we are taught in lecture halls? That hidden curriculum, the one not spoken of aloud but acted upon, is rather the anti-practice of medicine, the health-uncaring institution.

The cure, I believe, is not “humanism in medicine.” Because to me, the phrasing and the timing are all wrong. Let us pause, take a deep breath, remember deeply, and bring to mind what we seem to have forgotten. Medicine IS humanism. As Hippocrates said, “Wherever the art of medicine is loved, there also is a love of humanity.” And from that foundation, life-affirming questions can be asked:Who are these unique people who have come to me for help? 

  • What is their story?
  • How can I respond to their needs?
  • What kind of doctor am I?
  • What are the qualities of my medical practicing?
  • What does my health care institution reveal about how it cares for human beings who are sick?
  • How does this institution care for those who are trying to be of help?
  • And what intentional actions can I bring to my encounters with these center-of-the-circle people that show I care and that because I care, I am a more competent, effective, and professional physician?

This is not a quiz, but it is a test of how we will respond each day to the call of being a physician. One day we will all be at the center of that circle. When “connectivity units” are equal to “productivity units,” or better yet, when it is comprehended that there is no lasting productivity without caring and connection, the art of medicine will be practiced.

What We Talk About When We Talk About “Diversity”: An Interview with Kenya Beard

Kenya Beard

Kenya Beard

On June 18 nurse practitioner and nursing educator Kenya Beard and CHMP senior fellow Jim Stubenrauch and I will be leading Narratives of Diversity: Encouraging Cultural Responsiveness, a daylong event in which we’ll use exercises in reflective narrative to explore issues of diversity and marginalization in health care and health professions education. Our goal will be to foster awareness and generate ideas for making academic and clinical settings more inclusive (the event will be held at the CUNY Graduate Center in New York).

Kenya and I talked earlier this week about her work in promoting multicultural education as a way of increasing diversity in the health professions. Kenya has been a nurse for 28 years, in the emergency room, in a medical-surgical unit, and in home care. She got her doctorate in 2009 and for several years has been on the faculty at the Hunter–Bellevue School of Nursing, where she’s also the founding director of the Center for Multicultural Education & Health Disparities, which “seeks to promote educational reform and restructure institutions in an attempt to strengthen multicultural awareness and workforce diversity.” She is a faculty scholar at the Josiah Macy Foundation, and in 2013 the National Black Nurses Association named her nurse educator of the year. She recently received the Witten Award for Educational Excellence at Hunter College. The following is a lightly edited transcript of our conversation.—Joy Jacobson, CHMP senior fellow, @joyjaco

You’ve worked as a nurse practitioner in home care for a long time. How does your work with patients open your eyes to health care disparities?
When I became a home care nurse I had some patients who were African American grandmothers. I would say, “Miss T, you want your blood pressure under control!” I wanted them to live; I didn’t want them to be a statistic. I would go to the cabinet and say, “This soup is very high in sodium. The sodium is killing you. You have to get rid of this soup.” The next week I’d go back and see the same soup. I never said, “Tell me what’s important to you.” I had to realize I lost some of my identity. It was more like, “Now I have the credential, and let me tell you what you need to do to get better. Let me help you.” We tend to do that.

Isn’t that how a nurse helps a patient?
When I went to school the focus was on educating your patients to help them make autonomous decisions. But when you dissect it—how are we helping them make those decisions? Were we taught from an ethnocentric lens? Joseph Betancourt is a physician at the Disparities Solutions Center at Massachusetts General Hospital, and he says the first thing we need to ask patients is what the disease means to them and what they call it in their culture. We need to take the time. And we don’t have enough time. We have to take the time to listen to patients. If we don’t take the time, the outcomes are going to be what we have had for the last 60 or 70 years, which is health care disparities. A report came out a few years ago that said we spent over a trillion dollars in three years related to health care disparities.

It’s about the nurse being comfortable supporting the patient’s cultural beliefs and decisions even when they conflict with ours.  That can be a hard pill to swallow. We’re in it to save lives. We’re not taught to say, “If the person is okay with this we should support that.” Instead we sometimes imply, “Your cultural beliefs are wrong. You need to listen to me!”

You talk about multicultural education. How is that different from the traditional health professions education?
Everyone comes in for an in-service on cultural competence and they check it off like fire safety. But multicultural education is a reform model that looks at the whole institution. James Banks says it has five dimensions, the first of which is content integration. Where are we getting this content from? For example, many curriculums add on separate books for LGBT concerns and the elderly. But it can’t just be an add-on. We have to see how different populations view illness and disease.

I have classrooms that are so diverse. One student of mine who was Hispanic explained to the class that there was no way in the world her grandmother would change her diet. There was a certain staple in the grandmother’s diet that was contributing to her high blood sugar. She was okay dying at 70 because her quality of life was so great. We did a role-play where an NP said, “We’ve got to get the hemoglobin A1c below 7; she has a 7.6.” The institution isn’t getting full reimbursement unless they have those kinds of outcomes. You can’t operate unless you have full reimbursement. So the philosophy is “Treat to target! Get her under 7!” They began the role-play and my students reminded me that we have no idea what to do when a patient doesn’t listen to us. But by listening to the patient they realized—oh, she does care! It blows their mind. They come away saying, “How do I help get her blood sugar under control without disrespecting her beliefs and values?” It has to start with a healthy relationship.

Many people might assume that health care providers know how to have relationships with patients.
We have a lot of assumptions that are contributing to health care disparities. The system is set up so that nurses assume that when patients are discharged with prescriptions that they will get them filled. If someone doesn’t take his prescription and ends up coming back he’s what some ER nurses call a frequent flier. Sometimes nurses never ask patients. We’re trying to change the system because of health care disparities. Diversity, cultural competence, and health literacy—those three things are crucial to improving the health of the nation.

What about access? What’s happened as a result of improved access to health care for minorities?
Healthy People 2010 and Healthy People 2020 were all about access and quality care. And the ACA is broadening access for minorities. But if I have chest pain at the age of 48 and someone with blonde hair does too, she’s likely to have better outcomes. Why is that? We have to have conversations people aren’t prepared to have, about race, power, and privilege.

You can’t superimpose new initiatives onto old systems and just say “Do it.” Just like we couldn’t impose desegregation on educational systems without some negative ramifications. I am a product of that. They could bus you in but the teachers didn’t have to like you. I was told, “Just be glad you have an opportunity to have the books that the others have.” We had access but at what cost? I remember my first-grade teacher. One day she told us not to erase anything. I went to erase and she said, “Hey, I said no erasing!” And she bit my pencil eraser off with her teeth. My parents said she probably thought I was cheating. They always told me I had to look down at my paper: “Some teachers will think in order for you to get the A you must have cheated.”

I went to a public school where students were bussed in and where some teachers didn’t want to teach us. Are we doing the same thing with health care 50 years later? We talk about diversity, but if we impose it on a system that’s not ready for it, we’ll have tremendous chaos. A provider might get labeled for having bad outcomes from CMS [the Center for Medicare and Medicaid Services]. That person might look at the patient and think, “My outcomes are bad because of you.” I have seen it happen in education. I was at a meeting where someone said their nursing-exam pass rate was low because “we let them in.” My back got all sweaty. I wanted to say, “Hello, I’m in the room, I heard you!” I now welcome those moments. We can’t change anything unless we bring out what people really believe.

How can we encourage people to start examining their beliefs? I imagine not everyone welcomes that opportunity.
Banks talks about prejudice reduction. We all come with biases and we’ve got to expose them. If I’m raised in a household where my parents are saying, “Some of your teachers won’t want to teach you. They might think your scores will make them look bad,” now my lens is jaded. I think: were my parents right? Your beliefs and experiences are going to determine what you see as your reality.

We are all going to have different experiences. There’s no right or wrong; our differences shouldn’t tear us apart. Respect and empathy mean you don’t have to like it, just understand how a person could think that way. We need to build an environment to allow faculty to look in the mirror and ask: what’s working? What’s the hidden curriculum? You have your teaching philosophy. But are you asking your students what they need to succeed? If you do they might say, “I can never find him during office hours” or “When I asked her to explain she said I need to look it up, that I should know it.” What are your biases and assumptions?

Have you worked with doctors as well as nurses around these issues of diversity?
When I did a workshop on cultural competency recently none of the physicians came. When I asked one of my colleagues why, she said that physicians had to put cultural competency in the curriculum years ago. Some think it’s old hat, but health care disparities are still happening. We need to have a discourse on cultural competency in the clinical setting and we need to do it as educators.

People need to talk about diversity initiatives. I’m not there to be the citadel of knowledge. People need a platform to engage in a discourse that allows them to talk and vent. They are in institutions where they sometimes feel marginalized, and they want to be part of a movement that empowers everyone.

How do you help people handle the discomfort that can come up when we start to talk about diversity?
Bob Kegan has written about the orders of consciousness. As children it’s all me me me. But in the fifth order of consciousness it’s not all about you. You’ve shifted to asking what’s best for you and for other people. Most adults never reach the fifth order. But this order is along the lines of Gandhi and Martin Luther King, people who see beyond themselves and see their role in society as making a positive difference. That’s about 5% of the population. The first step is raising awareness.

Kegan plays this movie clip where one man kills another in a religious war and feels tremendous guilt that the son is now an orphan. Gandhi tells the man that he should raise this young boy. But he has to raise him in the religion of his father. That’s what being at that higher order of consciousness is about. Being able to see our interdependence on others and realizing that by helping others we help ourselves. But how do institutions foster patient-provider relationships that recognize our interconnectedness?

Storytelling for Policy Advocacy

The following is a repost from Josephine Ensign’s Medical Margins Blog. I first met Josephine a few years ago at the University of Iowa’s Examined Life conference, which she mentions in the post. She presented there on a topic I had not heard of: narrative advocacy. I’ve since read numerous examples of the genre, simply defined as stories told to move a reader to action. A beautiful example is her essay “Next of Kin,” on her work as a nurse with a homeless man, in the 2013 anthology I Wasn’t Strong Like This When I Started Out: True Stories of Becoming a Nurse, edited by Lee Gutkind and published by In Fact Books. My colleague Jim Stubenrauch and I now require this book in our narrative writing courses at the Hunter–Bellevue School of Nursing. Josephine Ensign is a nurse practitioner, a writer, and an associate professor of community health at the University of Washington School of Nursing in Seattle. My thanks to her for this post and for her ongoing work as a writer, an advocate on behalf of marginalized patients, and a teacher using narrative to help nurses tell the stories policymakers need to hear.—Joy Jacobson, CHMP senior fellow

A common definition of narrative is a story with a teller, a listener, a time course, a plot, and a point. Storytelling is as old as campfires and cave-dwelling. (The photo here is of my father telling Appalachian ‘Tall Tale’ stories to his grandchildren.) Storytelling is how we learn about our world, about ethical living, about history, about ourselves. Within the healthcare arena patients and family members tell their stories to nurses and doctors and other members of the healthcare team. It is still a truism that something between 80-90% of the information needed to make a correct medical or nursing diagnosis comes from the patient’s history, from their story.

Storytelling and story-listening are not only important at the individual patient level. They are also important at the community and public health level. Stories can be effective ways to educate and persuade the public and lawmakers on a variety of health and policy topics. Storytelling (pathos) is part of Aristotle’s three essential components of rhetoric: the art of persuasion. The other two components of rhetoric are logic/reasoning/facts (logos) and the credibility of the speaker (ethos).

Several years ago at The Examined Life: Writing and the Art of Medicine Conference at the University of Iowa, I co-led a workshop “Narrative Advocacy: Writing Lives, Making Changes.” My co-leaders were Marsha Hurst, PhD, a core faculty member in the Program in Narrative Medicine at Columbia University, and Carol Levine the director of the United Hospital Fund’s Families and Health Care Project in NYC. Here’s the abstract of our workshop, which I still refer back to as my own guide and articulation of what I am passionate about:

Narrative advocacy is the practice of using narrative competencies to advocate for improvements in care. It involves moving beyond the individual stories, to include the connections made within the wider community, and acting upon common interests in order to effect positive change in clinical care, in institutions of caring, and in health policy. In the U.S. there is a long history of health advocacy built on narratives of lived experience of illness and disability, and more recently, grassroots narrative advocacy has expanded through the use of social media. For health care providers and students in the health sciences, narrative advocacy can be a powerful avenue for engagement in health policy because it connects the unique individual experiences with larger issues. As powerful as narrative advocacy can be to engage and persuade policy-makers, it can and has been misused. It is important to have both knowledge and skills in how and when to use narrative advocacy responsibly and ethically.

This past week I had the opportunity to participate in an excellent online training “The Role of Narrative in Public Health” sponsored by the Center for Digital Storytelling located in Berkeley, California and facilitated by Amy Hill. She gave four reasons personal stories are so powerful: 1) stories are universal and typically follow a familiar structure, 2) stories are intimate and touch the heart in a way facts/figures can’t, 3) stories are honest and aren’t as slick and sensationalized as they often are in journalism, and 4) stories don’t (typically) tell us specifically what to do. The Center for Digital Storytelling uses a participatory media and group process to help people create and share their personal stories. Working in groups makes the individual stories more powerful, and the process can be empowering and healing for the participants.

The Center attends to the ethical practice of digital storytelling (would be the same for any type of narrative/storytelling work I think). They ensure storyteller well-being, use principles of cultural humility, and adhere to a set of guidelines in working with people impacted by trauma. They point out that consent is an ongoing process, that the question of story ownership and of sharing and distribution of the stories should be clearly addressed from the very beginning of the project. Amy showed us several powerful digital stories from their various projects. My favorite was on motherhood and women’s rights from their “Silence Speaks” project: Dear Ayhan by Rawan Bondogji. A perfect story for Mother’s Day. It is beautifully done.

Here are some additional narrative advocacy pieces that I use in my teaching:

  • The WHO project “What’s Disability to Me” series, but especially Rachael’s story (UK nurse and her story of overcoming discrimination within the health care system including nursing school) and Faustina’s story (Tanzania).
  • Joshua Bennett Poetry Slam/Performs at the White House, an amazing poem about his relationship with his sister Tamara who is deaf.

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